Towards an operational definition of Personal Assistance

"Personal" assistance means that users exercise the maximum control over how services are organised and custom-design their services according to their individual needs, capabilities, life circumstances and aspirations.

Persons with extensive disabilities need assistance by other people in their everyday lives with such activities as getting bathed and dressed or going to the toilet; with shopping, preparing meals, cleaning or doing the laundry; with such responsibilities within the family as doing the practical tasks involved in raising small children or assisting one' s aging parents. Assistants help the user at work, about town and on travel. They assist in communicating or in structuring the day, as the case might be. In brief, assistants help with those activities which the user would have done by himself or herself, had it not been for a physical, sensory, mental or intellectual disability.

Just as other persons with less extensive disabilities can compensate their functional limitations by using assistive devices, assistance - if properly organized - can enable us to become fully-functioning citizens. Doing everything by oneself is not always the most efficient way of achieving one´s goals. What counts is to get things done according to one´s own needs and wishes.

People who are dependent on others for the most basic needs of life face prejudices. For instance, somebody who is physically dependent on other persons may also be considered emotionally and intellectually dependent. Somebody who cannot pull up his or her pants like a small child, may be treated as a small child in other respects as well. The result is often over-protection and custodial care where other people make the decisions.

It is no surprise then that the Independent Living philosophy is most easily grasped by people who are dependent on assistance in their every-day lives. This is also the reason why the Independent Living Movement emphasizes the importance of the quality of assistance for users who want to achieve maximum independence. In order to provide an operational definition for quality, the Independent Living Movement coined and defined the term "personal assistance":

"Personal" assistance means that users exercise the maximum control over how services are organised and custom-design their services according to their individual needs, capabilities, life circumstances and aspirations. In particular, personal assistance requires that the individual user decides

who is to work,

with which tasks,

at which times,

where and how.

Thus, the individual user must be able to recruit, train, schedule, supervise, and, if necessary, fire his or her own assistants. Simply put, "personal assistance", means that the user is the boss.

It is recognized that users with learning or mental disabilities will need support from third persons with these functions.

Personal assistance enables users to take their rightful place in family, at work and society with all the rights and duties that the general population takes for granted. With personal assistance persons with extensive disabilities need no longer be a burden on their families. Parents, husbands or wives do not need to stay at home and sacrifice their careers. Personal assistance users not only manage on their own, they can also take their share of household and child-rearing. With personal assistance we can attend school and educate ourselves, enter the labour market and become tax-payers. When we fall in love, our partners need not fear that they are about to sign up for a life-long 24 hour job.

Most existing services cannot be called "personal" assistance because they are tied to given physical locations, such as institutions, and not to the individual who needs the service. Thus, the user has to follow the service rather than the other way around. In this way, many disabled persons spend their lives away from their families in institutions, since assistance is provided only in the institution but not in the community.

Most community-based services do not provide "personal" assistance either, because the individual user is not in the position to recruit assistants and has to accept assistance from available staff. Inherent in these solutions is their hierarchical structure with the user at the bottom and the user' s dependency on the decisions and rules made by other people. Also, whenever several users share the same staff, freedom of movement and choices are severely limited.

Other limitations exist when assistants do not have proper employment contracts and wages. Under these circumstances users can neither demand quality work, attention and reliability nor can they feel fully in charge.

Adolf D. Ratzka

April 1997

What is personal assistance ?

Everybody uses assistance. Nowadays, we all are dependent on each other. Nobody can perform all the tasks necessary to sustain his life-style. So, people instead of fixing their own car take it to a mechanic. Most people do not know enough about cars or do not have the time. By utilizing somebody else's knowledge and resources we can compensate our lack of ability or lack of time. People like to specialize in doing what they are good at. Most other things they delegate to somebody else. In this way one can be more efficient in the sense that one gets more done. "Personal assistance" then means that we compensate our disabilities by delegating tasks to other persons. These tasks involve activities which we cannot carry out ourselves or which we are not good at. We delegate in order to have the time and energy to specialize in those activities which we can perform well. "Personal" connotes that the assistance has to be customized to my individual needs. "Personal" also means that the user decides what activities are to be delegated, to whom and when and how the tasks are to be carried out. I think in a world of personal computers and personal telephones the term "personal assistance" is quite descriptive.

What are the alternatives to "personal assistance"? In English, the terms "attendants", "personal care attendants", "carer", "home help", etc are used. Most of these words contain the word "care". To me this word carries the connotation of taking care of somebody who cannot take care of himself or herself. The relationship between "carer" and "caree" implied by this term is not one of voluntary association for mutual gain, it does not clearly state that the "caree" is the one who decides what has to be done. The term "home helper" indicates that "help" is to support activities only in one's home as opposed to a lot of other places such as at work, on the bus, at a friends' house, on trips, etc. I am sure that in most languages we will find similar expressions which imply that we are helpless, somewhat stupid persons who, like small children, cannot look after themselves and need supervision.

If we want to design services which get us closer to the goal of equal opportunities, we have to find expressions for such services which portray us as responsible and capable citizens who are in command of their lives and not as passive objects. Language both influences and reveals attitudes including our own attitudes towards ourselves.

In what forms has assistance been available so far?

Family as assistance provider

In most countries the most common form is the family. Reliance on the family may work for some time but the limitations - even under the best of circumstances - are given. Family members get older, they are risking their health in assisting us. Children often have to take too much responsibility too early in their lives. Adults cannot pursue their career and feel locked in. The results are relationships of mutual dependence, sacrifice and guilt. Where guilt is often mistaken for love.

Facing the alternative which in many countries is institutional placement of the disabled family member most families hold out as long as they can - often without any outside assistance - burdened by immense physical, financial and emotional strain.

Volunteers

In some places families get help from volunteers. The virtues of volunteerism are most often praised by conservative politicians whose motives are to cut taxes for the benefit of their voters. Obviously, users of assistance from volunteers cannot demand the same competent, punctual, and courteous work from volunteers as they might from assistants who are paid competitive wages. But in most instances users who utilize volunteers do not have that choice.

Stationary institutions

The alternative that most of us in Europe have is to live in some sort of institution. Institutions are administrative entities and as such are governed by the necessities of administering buildings, workers and inmates within the boundaries given by budget, labor unions, and state regulatory agencies. These constraints are expressed in a multitude of rules which cannot be adapted to the needs of each individual. Otherwise there would be chaos. As a result, a certain order has to be maintained to guarantee the smooth functioning of the whole. The individual's challenge, then, is to adapt himself or herself to the existing order both physically and psychologically without losing one's integrity as a human being. That is very difficult. One of the survival strategies is to develop a pleasing personality with which you can achieve privileges at the expense of other inmates who are not as adaptable.

The general results of institutional living are known as "hospitalism", that is loss of social skills, foregone life opportunities, and stunted human growth. The problem we are facing in helping people who have been staying in institutions is that they often have lost their self-confidence and are frightened by the prospect of leaving their secure confinement.

A definition of an institution

Perhaps it is appropriate at this point to attempt a definition of an institution. I suggest that we face an institution if

there is no other alternative,

we cannot choose who is to assist us,

the user has to adapt his needs to the needs of the whole scheme,

there are written and unwritten rules regulating the assistance, rules over which the user has no control,

the assistance is limited to certain hours, activities, locations (for example, you have to live in certain houses as opposed to living anywhere),

the staff providing assistance is shared by several persons,

there is a hierarchy with the user at the bottom of the pyramid.

If we accept this list of institutional characteristics, then most forms of assistance fall under this category.

Mobile, ambulatory institutions

Take community-based public services. In most of these schemes a caseworker at the municipal social service department or at some charity organization assesses your needs and sends workers into your home. Tasks and hours are well defined. Hiring, training and scheduling of the workers is done by the supervisor. These services constitute a tremendous advantage over institutional placement. But you as the user are not in control, you share assistants whom you cannot choose or train yourself. As a result, you are made dependent on other persons' judgement and have to limit your life. You might even limit the use of this type of service to the absolute minimum, because the quality is so low.

Sometimes community-based services are run by organizations of disabled people. If they use the same organizational solutions, the quality of their services will not be much better.

False independence

Those of us who need assistance are used to restricted lives. For one, most of us have been exposed to the present rehabilitation philosophy which wants us to do as much for ourselves as we possibly can and even more. "Push your limits, try harder. Exercise, exercise. Don't get lazy, use your manual wheelchair, not your power chair! "

Our first goal, according to rehabilitation professionals, is to be independent and manage with a minimum of technical aids. Personal assistance should only be used as a very last resort, since it is considered a recognition of failure on the part of the professionals and ourselves. Or have any of us been taught by a rehabilitation specialist how to delegate tasks to other people? Many of us have accepted these professional priorities. Their purpose in life seems to get out of bed by themselves, get washed and dressed by themselves, to cook and clean. Never mind that it takes the whole morning. Never mind that they get so worn out that they have to rest the other half of the day to recover enough strength for going to bed. They may not have a job, they may not be able to do much outside the home, they may not have time and energy to get involved in disability politics and fight for equal rights. But they are proud of being independent.

This narrow definition of independence is reinforced by society around us. "Good boy, look how hard he is trying!" Politicians and administrators like to see us try hard, since they save money on us this way. Personal assistance is expensive. But what a narrow definition of costs this is! What about the time and energy we could use for other achievements, if we allowed ourselves to use personal assistance!

Medical evidence in recent years shows that many of us overexert their remaining muscles, nerve cells and ligaments. As a result they wear themselves out before their time. Too much exercise may cause irreparable damage. The harder we try, the faster we waste ourselves.

The brainwashing that many of us receive in rehabilitation distracts us often effectively from painful comparisons with other people, our non-disabled friends, relatives and neighbors. How often do we allow ourselves to compare our lives with theirs? It can be painful to admit to oneself that we too would like to have a good job, a nice home and a family. But for many of us these things will be out of reach forever, if we do not have the possibility of delegating practical tasks to personal assistants. Ultimately, it is a question of self-respect. If we respect ourselves as persons of equal value, then we expect and demand the same lifestyle that others take for granted. Then, we will also want to use personal assistance as one of the tools to achieve these goals.

I would like to use an analogy. An entrepreneur or administrator will realize that he or she alone can get done only so much. By employing other persons the entrepreneur can delegate work and in this way increase the total output. Would it be wise for a factory owner to try to do everything all by himself? Most likely such a person would either die of exhaustion or be out of business pretty fast. If entrepreneurs and administrators are not ashamed to utilize manpower to achieve their goals why should we hesitate to do the same?